Does anyone here have PCOS or know anything about it? (sorry guys, more girlie stuff)

[Teysa]

Yesterday I went in for my annual well-woman exam. According to the doctor, I probably have PCOS. They did some blood tests to check on everything but the way she was talking that's just a formality. On the one hand, I'm relieved because at least now there's an explanation for the mood swings, depression, weight issues, and other problems. On the other hand, I'm a bit scared because I still don't understand much about it. I was hoping someone on here had some experience in this area. I'm not even sure why this is bothering me so much. It's not like I have a terminal illness.

Anyways, thanks in advance for any advice.

[Magpie]

Ok, seriously, when I found out I was mopey for a long time. And I'm getting really depressed about it again...

I can tell you that my body constantly thinks that it's just about to ovulate. And that it takes a while for it to actually do so.

According to my gynecologist, pain from this is due to the fact that your cycles are long - it's from having abnormal buildup of the uterine lining. I think that with normal long cycles (because mine aren't that long, but I still have prescription anti-inflamitories) your body doesn't build up the lining in the same way.

I've been advised that cutting white sugar out of my diet can help control symptoms, as can starting running. I'm still trying to figure out how completely I have to cut sugar out (I miss jam), and if other forms of exercise would also help, as I really can't run. I'll let you know when I hear back.

There's not a lot of advice that I can give. I'm sure you've already learned how to deal with irregular cycles. Bear in mind that you can and should get treatment for pain you're experiencing. Throwing up from pain is NOT normal. Blacking out is NOT normal. You owe it to yourself to get treated. Options include hormonal contraceptives which regulate your cycle (they make me horribly ill though), trying to get a prescription for something which works (naproxen is a wonderful thing, it actually has an effect), or trying diet alone to control cramps - I'm still trying to refine this one and figure out if I need to be vegan/caffeine free/low sugar all the time, or if it works only after I ovulate. I'll let you know if I figure it out.

[Seshat]

I have it, and I know a lot about it. I can help both of you.

PCOS is not just a problem with the reproductive hormones. It affects the insulin system as well. In fact, it's a feedback loop: insulin affects the repro hormones affects the insulin.

The details of the feedback loop are interesting in and of themselves, but it's complex enough that I'd have to go find out which one of my PCOS books its in and re-read it myself - I'm not sure of exactly how it works.


Roughly, however, the body becomes insulin resistant, so when you eat anything that creates a boost in blood sugar, the body gets an insulin surge (because the cells aren't taking it up), and the insulin surge triggers the repro hormones to go whacko which increases the body's insulin resistance which.....

(If anyone's interested, ask me to dig out the book and I'll write it up more properly - and more correctly.)


You/doctors can attack the PCOS from either side - repro hormones or insulin. To deal with the insulin side, get the advice doctors give diabetics, and follow it. This will smooth out your insulin surges, make your body cells less insulin resistant, and make the insulin stop affecting the repro hormones so much (because you won't have the insulin surges).
To understand how the insulin stuff works, it's exactly like the problems diabetics have, except that it's not caused by the pancreas, it's caused by your reproductive hormones making your body cells more insulin resistant.
Studying diabetes info is very helpful for PCOS patients. I'm referring you straight to that rather than typing it out here because that's all written by doctors, rather than my faulty memory!

To attack it from the repro hormones side, the doctors put you on some form of the pill (repro hormones!), and try to override your natural abnormal hormones with the synthetic 'normal' hormones. If this works, it reduces the repro-hormone caused insulin resistance, thus reducing the tendancy for insulin to surge in the first place.


To help yourself, the best thing you can do is reduce insulin resistance in the body, and to eat a diet which transmits sugars into your blood slowly.

ANY exercise of ANY sort reduces insulin resistance. You don't have to run. You can garden. You can play catch with your children. You can walk the dog. You can spring clean the house.

30 minutes of moderate exercise a day is ideal - that's exercise which brings out a sweat, but you can still easily talk. (but not sing) However, 5 minutes of light exercise is a LOT better than 0 minutes of exercise. So do the light exercise, and gradually build up to the 30-minutes-moderate.


As for diet, the 'glycemic index' stuff is the current best-practice for diabetics. "Glycamic Load" is under development as an upgrade to the index.

[Aethian]

PCOS is not just a problem with the reproductive hormones. It affects the insulin system as well. In fact, it's a feedback loop: insulin affects the repro hormones affects the insulin.

QFT

My two docs, diabetic and Gyno work in the same building and had to add me to their list of patients to discuss in the same room to try and figure out a plan for.

*wanders back into darkness muttering*
Stupid frickin chemical levels....just couldn't stay down...

[AccountingDrone]

I was PCOS my entire reproductive life - and ended up diabetic.

One of the best things I ever did was go on norethindrone and totally suppress the whole girly torment of monthly cycles. I just wish I had done it 25 years ago and avoided 25 years of pain, bleeding out, mood swings, whacked cycles. The absolute best thing I ever did was get a hysterectomy, but that is a bit extreme [ok the tumor on the ovary helped my doc make the decision ...]

The plus side to total supression, other than the lack of bleeding and discomfort is the lack of hormonal induced mood swings, and the relief from this monthly torment of a ravenous urge to eat everything fatty salty and sugary in sight [which is deadly to a diabetic, you have to develop iron self control] and since it is a pill, if you do decide to reproduce, you can go off the pill and resume fertility [though PCOS has its own fertility/reproduction issues]

Watch out for endometriosis, by the way.

[Magpie]

The catch with me is that none of the doctors I saw about this said anything about my blood tests showing insulin resistance. And given that the GP at Health Services needed to look it up in his reference book to find anything that I almost fit, you'd think he'd have gone "Oh! There's a second point that matches! Yay!"

[Seshat]

You can be at sub-diabetic levels of insulin resistance (ie, they don't bother flagging it as an important/abnormal thing) and still have it screwing you over PCOS-wise.

For something that affects so many people, PCOS is scarily little-known and poorly diagnosed.

[Teysa]

Thanks guys. One thing that helps is my husband was diagnosed as a diabetic a while back so I've already been fixing diabetic friendly meals. My job also involves a lot of moving around and lifting so that helps at least a little with the exercise. On a more positive note I did lose 10 lbs since my last visit. Not a whole lot, but at least it's going in the right direction.

One thing that is kind of depressing is the fact that I might not be able to have children even if I decided I wanted one. (I haven't been quite as anti-kid lately as I once was.)

[Seshat]

Don't think of it that way. You can have a child - he/she just might not be a child of your body.

PCOS patients do have babies all the time, however. If you think you might ever want a baby, work on making yourself healthy starting now. Don't let it take over your life, but use your knowledge of diabetic eating to change the food culture in your home; and really get into the lifting and moving part of your job. Feel those muscles moving, and learn to recognise the not-quite-a-pain of new muscle being made.

(The ache after unaccustomed exercise is your body developing new muscle to accommodate the new tasks you're asking it to do. If you have PCOS, this is GOOD - more muscle, especially more active muscle, equals less insulin resistance.)

Learn to tell how your body feels when its been exercising every day, and learn to like that feeling: so that you'll miss it if it changes. That, more than anything else, will prompt you to do daily exercise. It'll give you a positive 'hey, I want to feel good' reason; rather than a negative 'I'm scared of PCOS' reason.

Do that, and you will be in the best possible shape to care for a newborn. Not so incidentally, you'll also be in the best possible shape to conceive and carry - though you may need help with repro hormones.

IF you decide you want to raise a child, put in an application for adoption simultaneously with making an appointment with a repro endocrine specialist. And both of you see a psychologist or counsellor, so you can honestly say that you don't care which happens first - a conception/pregnancy, or a call from the adoption service.

However, I will also give you the advice I give anyone contemplating having children. (Ha! I'm an advice machine.)

* Do you genuinely enjoy the company of children of all ages - from newborn, through terrible-twos, young childhood, pre-teen, teenage, young adult, and even adult?

* Do you genuinely enjoy being responsible for someone utterly dependent on you for everything? If you have a cat, do you ever find yourself resenting cleaning the litter tray - and if so, is it a resentment that can be completely wiped away by the sight of kitty, even if it's kitty scratching the furniture?

* How would you feel if your baby was born with Down Syndrome or cystic fibrosis? Your precious 5 year old fell off the swings and landed badly, and his knee joint can never be fully right again? Your teen develops schizophrenia?
Would you cope?
(My best friend's mother and I occasionally have a mutual not-quite-cry on the phone. SHE knows that if A (best friend) didn't have us, she'd either be dependent on her mother still, or be in an institution. I can HEAR her relief across the phone line.)

* Does the task of taking a newborn baby, and helping him/her develop into a healthy, happy, functional adult member of society fill you with joy, or dread?
(Or 'as healthy/happy/functional as possible', if the child is disabled in some way.)

* (Optional) Do you believe that your parenting and your genes justify the additional 'footprint' of another human being?
(Note: adopting or fostering an existing child nulls this question - the human being is already here and needs good parenting.)


I am not going to pass judgement on anyone for their decision to have a child or not. I just think that some people are natural parents, and some aren't. I'm one of the "aren't"s.
I firmly believe that it's better to regret not having a child, than to regret having one. BUT - that's my belief.

[Teysa]

Slight Update

They got my test results back and my testosterone is a bit on the high side. I'm supposed to go in later to talk to the doctor. At least now that I know what the problem is it will be easier to fix it. The good news is my thyroid and blood count is good. I was a little worried on the thyroid because my grandmother and my mom both have issues there. I've told them both that I love them dearly but I'd rather not inherit medical issues, thank you.

Anyways I'm a little nervous about this visit but at the same time it will be good to know what my options are.

@Seshat

My husband and I had a long talk about the whole having kids issue. I think what upset me the most was feeling like I had the choice taken away from me. Realistically though neither one of us are in a position to be parents. He's not working right now because of medical issues and I make just enough to cover the bills and not much else. For the time being I'll content myself with spoiling the nieces and nephews when I see them. At least with them I can give them back.

[Sliceanddice]

Yesterday I went in for my annual well-woman exam. According to the doctor, I probably have PCOS. They did some blood tests to check on everything but the way she was talking that's just a formality. On the one hand, I'm relieved because at least now there's an explanation for the mood swings, depression, weight issues, and other problems. On the other hand, I'm a bit scared because I still don't understand much about it. I was hoping someone on here had some experience in this area. I'm not even sure why this is bothering me so much. It's not like I have a terminal illness.

Anyways, thanks in advance for any advice.

i was diagnosed when i was 14. i have the kind that makes me completely period less unless i have extreme hormone fluxuations or aka the one that makes docs worry because it can mask cancer symptoms.
First ill talk medicine.

First i was put on birth control cause i was 14 and the docs wanted me to feel normal and the hormones help.
Then i was was moved from month to month to seasonal because the age 12 to age 14 without periods gave my endometreosis, less periods allowed it to correct itself.
Then they added metformin. If you are drug sensitive ask your doc to put you on actos or something else instead. Before i turned diabetic metformin made me sooooooo sick. mostly because A my doc didnt take the time to explain the need to EAT FIRST and the drugs say take with food or after a meal which is not good and because B my blood sugars where lowish already usually around 90-120 through the day and metformin is heavy duty and made my sugar levels drip to 50 and few times 30. thats not good.

Now im diabetic with other risk factors so im only on progesterone... so hormones still suck for me......

Ask you doc for an ultra sound. This will allow your docs to make sure your ovaries are in good condition as well as get a baseline for other health issues. Since women with PCOS often experience pelvic pain, irregular periods, mood swings, infrequent periods, as well as hormone spikes and influxes and other minor issues they can be prone to cancers of the cervix, uterus, ovaries, and flupion tubes. A regular ultra sound every now and then can just make sure every thing is normal and catch a cyst before its an issue.
Be prepared to talk to an insurance person if you have private insurance. Why? Eventually you will need/want an intravaginal ultrasound since that ultra sound is the ONLY ONE that can see all the little minute details of the uterine walls and cervix, and the only one that help identify cancer in the uterus before its at a 'im sorry you only have a few monthes to live' stage.
The problem is its more..... invasive than the regular and costs a bit more and most private insurances will do everything not to pay for one until you are cancer ridden. its once of those they rather save a hundred bucks now even if that means they got to pay out a million later situation. but its one of those things you can usually win on appeal by simple showing your medical records and explaining you rather not have them spend a million dollars on cancer treatments because they REFUSED to do a simple test every now then that would prevent the danger of it, implying that your smart enough to get a malpractice lawyer if the refuse the appeal and simple appealing since you went through the hoops.

now on to babies.
You can get pregnant.
You can get pregnant with your own kid.
You can get pregnant with your own kid with out medical intervention.
You can get pregnant with your own kid with out medical intervention by mistake!

So i you are sexually active use protection unless you want a baby.
Now about 25-50% of women with PCOS either have extreme difficulty getting pregnant or can not period. But cant not period can actually become can not without medical assistance to stimulate the follicles, give fertility drugs or to implant. But heres the fun thing, fertility drugs tend to have hormones in them and they are actually an viable alternative to birth control for treatment. so again, you may need to appeal the insurance idiots but they cant claim its not a treatment for your disease.

Oh and the can not get pregnant period can be turned into ' i didnt know i could get pregnant so when i lost all that weight, started taking vitamins and other healthy stuff i had lots and lots of sex and 9 monthes later a scream child came out of my body WTF' because you 'can not get pregnant' because of hormone, body coniditions, weight ect. ect. and you make a big dramatic change in your life such as diet change, activitiy change.

Hell you just increase the amount of sex you are having (you go from once in a blue moon, once a month, once a week to every night every day, or just more often than before or even less than before in a few instances) has been shown to make the whole getting pregnant thing more possible with PCOS.

Again you have just been dianosed with a mostly reproductive condition... do not think this means you are going to be childless.

now on to the omg what! thing.

You have too much testosterone in your body. at least you do compared to estrogen in most cases. you can have courser hair grown, male pattern hair growth, discoloration of the body, mood swings, increase muscle growth and an increased sex drive.
use conditionor, if you dont like to shave look into getting laser hair removal, the discoloration will mean no bikinis unless you like redish/brownish/purplish discoloration for all to see, the muscle grown can and will mean you have increase strength but could lose some flexibility so be careful with weight training and excessive exercising in one field just mix it up and you will be ok, the sex drive?....... just try to be discreet.

any other questions just ask

[Magpie]

I think what upset me the most was feeling like I had the choice taken away from me.

I was 18 or 19 when I was diagnosed, and I was convinced that I was never going to have kids (and thought I had dealt with my discomfort with that issue). I cried several times when I was diagnosed, and on top of that my gynaecologist had been very careful to explain that it didn't mean I'd never be able to have kids. (I knew even at the time that I wasn't a really bad case, because I menstruated fairly regularly. I didn't know at the time that I ovulated, but I figured that if I was menstruating regularly I probably did).

now on to babies.
You can get pregnant.
You can get pregnant with your own kid.
You can get pregnant with your own kid with out medical intervention.
You can get pregnant with your own kid with out medical intervention by mistake!

You will have a dickens of a time if you want to try to get pregnant. You know how the "polycystic" part comes because ova will develop, but you won't ovulate? What this translates to is that my hormonal levels after menstruation go straight into "about to ovulate" mode, so I can tell AFTER the fact, but not really predict it with any accuracy.

[Sliceanddice]

I was 18 or 19 when I was diagnosed, and I was convinced that I was never going to have kids (and thought I had dealt with my discomfort with that issue). I cried several times when I was diagnosed, and on top of that my gynaecologist had been very careful to explain that it didn't mean I'd never be able to have kids. (I knew even at the time that I wasn't a really bad case, because I menstruated fairly regularly. I didn't know at the time that I ovulated, but I figured that if I was menstruating regularly I probably did).



You will have a dickens of a time if you want to try to get pregnant. You know how the "polycystic" part comes because ova will develop, but you won't ovulate? What this translates to is that my hormonal levels after menstruation go straight into "about to ovulate" mode, so I can tell AFTER the fact, but not really predict it with any accuracy.

yep true, but you also can try and have no success give up and then opps lol

[NorthernZel]

yep true, but you also can try and have no success give up and then opps lol

That's what happened to me. I and Mr Zel had tried to get kids for 5 years, we kinda gave up (I had at that time read a bit about PCO/PCOS and suspected that I had symptoms that matched), and all of a sudden Lil' Zel was here

I have been diagnosed with PCOS recently, although it is a "mild" case (the symptoms are severe enough, but my hormone levels are so "low" that medication would do more harm than good) so it has to get treated by exercising and change of eating habits. Bit of a trick, since the symptoms also cause an insuline level that makes one CRAVE for sugary stuff... but I've got to find a solution about that. For now, I've been connected to a training programme supervised by physiotherapists and nutricians. Had my first session yesterday and felt quite happy and energetic after that.

[Sliceanddice]

That's what happened to me. I and Mr Zel had tried to get kids for 5 years, we kinda gave up (I had at that time read a bit about PCO/PCOS and suspected that I had symptoms that matched), and all of a sudden Lil' Zel was here

I have been diagnosed with PCOS recently, although it is a "mild" case (the symptoms are severe enough, but my hormone levels are so "low" that medication would do more harm than good) so it has to get treated by exercising and change of eating habits. Bit of a trick, since the symptoms also cause an insuline level that makes one CRAVE for sugary stuff... but I've got to find a solution about that. For now, I've been connected to a training programme supervised by physiotherapists and nutricians. Had my first session yesterday and felt quite happy and energetic after that.

has your doc prescribed metformin? because that or actos instead of bc or baby drugs can work well on symptoms, the actos in particular since its a mush mush mush milder drug than metforimin in fact its usually used as a booster.